SWIFTY FOUNDATION

1. Increased collaboration - between researchers, research institutions, drug companies, legislators and between family foundations to find a cure for pediatric brain cancer 2. To fund the most compelling research to find a cure for recurrent medullablastoma 3. To get diseased tissue to researchers

1. Collaboration- we have joined many collaborative groups such as CAC2, CBTTC, PBTF. We are hosting a conference at Luries' Children's Hospital to convene leading researchers from around the nation to develop a standard best practice for collecting and shipping autopsy tissue from children. We are working with other family foundations to fund recurrent medullablastoma research. We are working with another family foundation to disseminate information about tissue donation to newly diagnosed families. We attend collaborative webinars, conferences and meetings such as CAC2, CBTTC. 2. Tissue Donation- we have funded/developed a first of its kind Post Mortem Tissue Donation program at CHOP. We are shooting an informative video for families and medical professionals about the need for tissue donation starring experts from around the country. We have developed and funded a Tissue Navigator staff position at Luries Children's Hospital to act as a regional resource for tissue collection/dissemination. We are in the process of developing a website, MyTissue.org to act as an information center for tissue donation. It will teach parents how to be good stewards of their child's tissue (so they can partake in any future treatments), explain the need for diseased tissue, list researchers that they could donate to, explain the steps to donate at the time of death, answer questions, etc

We are capable of meeting the collaboration goals because we are members of CAC2 and are on the Advisory Committee for the CBTTC. Al Gustafson, Swifty's board chair has been named to the Executive Board of the CBTTC as liaison between the Advisory Committee and Executive Board. In that role he is in contact with 18 different family foundations and the leaders of the CBTTC and CHOP which gives him insight into where collaboration is happening and where it is breaking down. We also attend conferences and meetings to learn the science behind the research and to learn about the latest studies/research opportunities for recurrent medullablastoma. Swifty has contract staff to help with outreach and social media. Finally, both Al and Patti Gustafson have the experience of running a family foundation for over 20 years as co-chairs of the Gustafson Family Foundation. Both Patti and Al have accounting degrees and advanced graduate degrees.

In the three years we have been in operation we have just raised our millionth dollar for pediatric brain cancer research, and have given just under $500,000 in grants. We have become well-known in the pediatric cancer community through our many collaborative efforts. Our junior board received the Youth in Philanthropy Award from the Chicago Chapter of the Association of Fundraising Professionals. We have advocated in DC and in Illinois for the passage of the RACE for Kids Act, the STAR Act and other important legislation for children. One of our junior board members served as an intern this summer as an advocate on the Hill making Swifty's priorities well known to our representatives. We have helped develop and got institutional support for a first of its kind Post Mortem Tissue Donation Program. Twelve whole brain donations have occurred since it's inception. We have developed, funded and had approved a Tissue Navigator position at Luries Children's Hospital... a brand-new position that will facilitate tissue donations in the Midwest.